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Author
Topic: Get a New Doctor? Be a Better Patient? (Read 4496 times)

When I started posting here in December, I was just killing time. Now I feel like it's the only thing between me and a bullet sometimes. I haven't put you up to a Turing test, but even if you're a machine somewhere generating posts and answers, that's fine by me. I just don't know what to do half the time, and I don't know who to ask. Frankly, the bullet sounds nice, I'm too chicken, and I don't have one anyway. Barring that, I want to go crawl under the couch and stay there until the building falls down someday. Improbable. So I'll ask you for more advice instead. Or maybe it's just venting. I don't know. Thanks.

I just came back from the doctor. I don't know exactly how, but this doctor-patient relationship has gone completely off-track. I felt sort of OK this morning. Now it's agitation and shame, but I don't know why. I'm also not sure which thing I did if I did (but I probably did). But let's move forward. I've only been there three times: the day I was diagnosed, a week later to get VL/CD4 numbers, and today. If I'm going to switch, I should do it now. I'm not sure how to find a doctor who'll work with my ADAP situation, but I'll do some research in a minute. Everyone else manages it somehow, so I can probably figure it out. This is the first time I've had a doctor since I was a kid, so maybe this is all normal and my expectations are wrong.

When I went in for the first appointment, I answered everything truthfully, including questions on drugs. I wish I hadn't. I haven't been there since December, and the first question is on that. It threw me a little, but I didn't want to seem startled or I was afraid I'd look guilty of something - which probably made me look guilty of something. It's hard to get out of those sorts of loops when they start.

He asked me how I was feeling. I said I was doing aright, but I'm really stressed about the housing situation and the unemployment situation and that I'm afraid I'm going to start having anxiety and panic issues again - it's completely exogenous, and I'm trying to be responsible and point it out to someone who could help prevent it. He tells me I should see a therapist (not in a dismissive way) and changes the subject to my weight. We check it, and since I haven't lost any more, we moved on to what sounded like the end of the visit. I had a list of things I wanted to ask written in Notes on my phone. We hadn't talked about the pills, so I brought it up and asked him if other people had mentioned feeling 'speedy' for a couple of hours after they take it. I've mentioned that on here: racing thoughts, too much energy, can't sit still. He seems surprised and says no. But it's a sort of, "I have no idea what you're talking about" kind of 'no', so I let it go. An uncomfortable feeling starts pushing in from each shoulder.

None of my side effects (if they even are side effects) are major, but the vertigo and the pain in the kidney areas might be indicators of something. Or maybe not. I dont know, but I wanted to ask someone who might know. But I just didn't feel comfortable asking anything else. So, there was silence for a while while he had some computer issue. They fixed it, and I get a new prescription for three months of Stribild. I'm on hold with that Optum mail order place right now, since they won't let us lepers near normal people at the pharmacy.

Just before I was about to go I decided to try again and said something like: "So, no one has said anything about this buzz that they feel right after taking the pill? It happens every time, and I just don't know if it's me or what." He closes the door and tells me that mine is a confusing/difficult case because there's "so much going on there", like the drugs... So, OK, that's a conversation stopper. There's nothing I could do or say at that point. I'm just a junkie poz whore to this place because it's on a note somewhere from the day I first showed up. They could at least add that my name is "Lee" on that note and stop calling me by my first name. But that's just me being bitter, and I don't want that.

I had thought I would come in, go over my list, he would check that everything's OK with the prescription, maybe some kind of test to see if Stribild is working, etc. The insert says you should monitor kidney function more with this stuff, so I thought maybe some questions or a urine test of some kind. I figured I'd apologize for missing my pill once (ugh, it happened on Friday - I wanted a perfect track record), and he'd say it's OK, but be more careful. etc. etc. But he wrote me a new prescription and said I should come back in 5 weeks. That's it. I guess that's standard timing. I don't know about that stuff, but I didn't really feel comfortable questioning the process.

So, anyway, other people on here say it's a great place, and it's not that big so it could even be the same doctor. So, it's highly likely just that I'm really difficult to work with. I want to find a new doctor, but at the same time I'm worried now that it's just something I'm doing that makes this go so wrong. If it's me, it's pointless to get someone new and just repeat this same process. Is there a way to be better patient? Is that even possible?

Blah. One thing I know is that I would never have survived the 80s and 90s. I can't even manage living with HIV now!

Sorry to read all of this. It sounds to me like your doctor kind of sucks.

As you know, I am also on stribild. I noticed the buzzy high feeling a few hours after taking it but its gradually stopped all together. at first, i would exercise to get through it, that worked well. after a few weeks its pretty much gone. i mentioned it to my doctor and we talked for a while about it. she said theres nothing really to show why thats happening. like, people know sustiva does that. since mine has gone away, we havent discussed it again.

Also like you, I was very honest with my doctors about drugs and alcohol when i first went in. They pretty much ask me about that near the beginning of every visit now. I think thats just the way doctors have to be about that stuff, so i wouldnt take it too personally. Luckily I've quit smoking cigarettes, cut back my drinking significantly and only smoke a little weed now so they're pretty pleased about all that. doctors have tons of patients. any warnings that they have about something damaging that they know about your health goes into your file as a red flag. i dont think it's very easy to get rid of those flags, so you cant blame them for harping on that stuff.

Because of how new stribild is and the kidney stuff. my doctor is monitoring my kidney functions VERY closely. It's kind of alarming that yours isn't? After two weeks on it she did a check up on me, poking around my stomach, chest and back, asking if i'd had any pains, listening to my insides with her stethoscope. then she did a blood draw and a urine test. shes going to do this every month for the first three months im on it so that shes satisfied with my bodies reaction. tomorrow, one month after my first dose of stribild, im getting my cd4s and vl checked to make sure its working well. its worrying that your doctor didnt ask about the kidney pains you were having. mine asked me SO many questions about that and wanted to know all about my piss and stuff.

i think you should get a new doctor. i dont know where you are now. im really happy with the care at mt sinai but you seem to think you cut your ties with them? why dont you go to the GMHC and talk to them. see if they can refer you. also i think you really need to chill out with the self loathing. i doubt any of these people you think hate you really do. you're probably only making situations more strained by imposing this super self conscious nervousness on all your interactions. again, i think some therapy would really help you.

hope this was somewhat helpful and you can start getting the care you need.

PS. I get my stribild every month from DUANE READE and im also on the ADAP. im sure you can work out a way to avoid the mail order.

Your doctor would be remiss if he didn't ask you what drugs or medication you take -- recreational or otherwise. It is certainly possible that he is (overly) dismissive of your concerns because he ascribes them all to drug use. But he does have to consider that as he is evaluating your situation and symptoms. The only way to get some satisfaction, and answers, is to ask him directly. That might sound hard to do, but doctors (like therapists) have mostly heard it all. And doctors have lots of people vying for their attention, so sometimes you gotta speak up to make sure they are paying attention. Being frank with your physician is a great way to see if he has the "chops" to cut it as your physician.

It also helps if you are at least somewhat cooperative with your doctor. It is a doctor-patient *relationship* as you said, and both parties have to contribute.

I just don't know what to do half the time, and I don't know who to ask. Frankly, the bullet sounds nice, I'm too chicken, and I don't have one anyway.

I'm hoping that you were just mentioning this in passing, but I don't take any reference to suicide lightly as I've lost too many people that way. If you are ever at that point and don't know what to do or who to call, go to the ER and ask for help.

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I'm on hold with that Optum mail order place right now, since they won't let us lepers near normal people at the pharmacy.

It's the wave of the future, not just for lepers. Lots of people only have the option of mail order pharmacies for their long-term medications. It kinda blows.

"You're call is important to us..."

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He closes the door and tells me that mine is a confusing/difficult case because there's "so much going on there", like the drugs... So, OK, that's a conversation stopper. There's nothing I could do or say at that point.

Au contraire. Speak up. He was honest with you, so respond in kind. Tell him not to dismiss you. Ask him to make the correlation between your drug use and your symptoms. And listen carefully to what he has to say.

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So, it's highly likely just that I'm really difficult to work with.

This is a point you've made before, so I'll accept it as fact. What do you want to do about that?

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I want to find a new doctor, but at the same time I'm worried now that it's just something I'm doing that makes this go so wrong. If it's me, it's pointless to get someone new and just repeat this same process. Is there a way to be better patient? Is that even possible?

My goodness you take this all so personally. Give yourself some time to get used to having HIV, working with a doctor, and become a better patient. Usually that means being honest about what is going on with you, insisting on answers rather than being dismissed, and thinking hard about what he tells you. He's not necessarily going to tell you what you want to hear. But, that's the stuff that usually is the most pertinent.

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Blah. One thing I know is that I would never have survived the 80s and 90s. I can't even manage living with HIV now!

You'd be surprised what you can survive.

Regards,

Henry

Logged

"Life in Lubbock, Texas, taught me two things: One is that God loves you and you're going to burn in hell. The other is that sex is the most awful, filthy thing on earth and you should save it for someone you love." - Butch Hancock, Musician, The Flatlanders

Hey oksikoko, I can relate. I have had a couple of shoddy doctors in the past, and what I would say is DON'T SETTLE! Life is too dang short to not feel totally 100% comfortable with your doctor. In my situation, I have an HIV doctor, plus a seperate primary care doctor, who handles the every day stuff. My primary care doc I have done to for years, she is wonderful, great listener, always takes the time to talk to me, etc. However, I have gone through a few HIV docs before I found a good one. The first one was good, but she left for a different state a short time after I started going to her, so they put me with a new guy. Well, you know how when you go on a date and within the first 5 minutes you know it ain't gonna work out? Yep, that's how it was for me with that doc. He was cold, uncaring, and rude, plus pretty creepy. I immediately asked for another doc. My personality is outgoing, blunt, conversational, and this doc was none of those things! Don't you hate when you have a doctor who makes you feel rushed and like you're committing a federal crime if you ask questions! Needless to say they got me a different doctor, and she is great. Very nice, funny, great listener, and always answers all my questions.

I would say everyone has the right to ask for a doctor who meshes well with their personality. Especially HIV docs, since we typically only see them a few times a year, it makes having a good rapport with them all the more important. So I would say, if you feel uncomfortable with a doc for any reason, or like they aren't hearing you, ask for a new one! Trust me it happens all the time, and it's worth it because nothing is better than a good doctor/patient relationship. Good luck!

They fixed it, and I get a new prescription for three months of Stribild. I'm on hold with that Optum mail order place right now, since they won't let us lepers near normal people at the pharmacy.

many ADAP programs do mail order/delivery through a state-approved pharmacy because this saves the program buckets of money. Because they order in quantity (for all the ADAP clients) ADAP gets an extra discount, and going through one delivery pharmacy helps minimize paperwork while giving the state better quality control of the service.

It really doesn't have anything to do with us as patients - except to make it easier! Clients (who are often poorer and hence need ADAP assistance) don't have to travel anywhere; clients don't have to wait because their local pharmacy doesn't stock antiretrovirals; nor do clients have to encounter any stigma from the local pharmacist.

Because of how new stribild is and the kidney stuff. my doctor is monitoring my kidney functions VERY closely. It's kind of alarming that yours isn't? After two weeks on it she did a check up on me, poking around my stomach, chest and back, asking if i'd had any pains, listening to my insides with her stethoscope. then she did a blood draw and a urine test. shes going to do this every month for the first three months im on it so that shes satisfied with my bodies reaction. tomorrow, one month after my first dose of stribild, im getting my cd4s and vl checked to make sure its working well. its worrying that your doctor didnt ask about the kidney pains you were having. mine asked me SO many questions about that and wanted to know all about my piss and stuff.

This! I wouldn't even know about the kidney issues if I hadn't researched it myself. No one told me anything about it at all. Most of it you can figure out, but the side effects can be weird.

You see your doctor once a month? I started Stribild on December 14. Today is the first time I've seen anyone since, and we didn't do any kind of tests. Kidneys never came up. It worries me a little. I had a terrible pain in my kidney area for about 6 hours a couple of weeks. It might be unrelated, but I've never had it before, so I thought it might be Stribild-related. It was on my list. I should've said something, but I think he would have just said it was drugs. And don't misunderstand, I'm not like on drugs. I have a *history* with drugs. It's not really relevant to my current problem. :-/ I wish I'd never mentioned it. I won't ever tell another doctor anything like that again.

i think you should get a new doctor. i dont know where you are now. im really happy with the care at mt sinai but you seem to think you cut your ties with them? why dont you go to the GMHC and talk to them. see if they can refer you. also i think you really need to chill out with the self loathing. i doubt any of these people you think hate you really do. you're probably only making situations more strained by imposing this super self conscious nervousness on all your interactions. again, i think some therapy would really help you.

This is at Mt Sinai. I'm connected with GMHC and I see someone there. I'll ask what they think about getting a new doctor. Now I'ma little more concerned about the kidney thing. Your doctora actually told you? I wouldn't know if I hadn't looked it all up myself. I made charts on all the different drugs and combos so I'd be prepared in the future.

You've never met me, so you have no idea how loathsome I am, dude. I do try, but it's not horseshoes and hand grenades.

PS. I get my stribild every month from DUANE READE and im also on the ADAP. im sure you can work out a way to avoid the mail order.

I have this weird situation where things have to go through COBRA first, then ADAP somehow picks it up. So, I have to use the mail order thing. I think this is why the social worker side of Mt Sinai was so frustrating. I literally begged them in tears for some kind of help with stress and they just didn't know where to put me or how to bill me. They told me to wait. That's not the kind of thing you can wait on, you know. I went to GMHC instead. At least they can remember my name.

Hey, Buckmark, thanks for the reply.

"Your doctor would be remiss if he didn't ask you what drugs or medication you take -- recreational or otherwise. " I'm not upset that he asked. I'm upset that drugs I used in November last year are keeping him from hearing about side effects I have now.

"I'm hoping that you were just mentioning this in passing, but I don't take any reference to suicide lightly as I've lost too many people that way. "

Eh, I think suicide should always be a person's right at whatever time they choose. Unfortunately for me, I'm way too scared to ever follow through. Hell, I'd do it right now if I weren't chicken. I'm just not able to. But if doctor-assisted suicide ever becomes readily available, I'm there. Sleep forever and somebody else has to push the button? Hell, yeah.

I agree with pretty much everything you said, but I don't want to have to test my doctor's chops or insist on things. It's not a competition, and if it is, he wins, because I'm not playing. So, now that I think about it, I shouldn't be complaining about him here. You get what you're worth or what you're willing to fight for, and he's not going to go out of his way to do much for someone like me, and I'm not gonna fight for it. So. there it is. I'm sort of realizing this as I type it. I'm thinking I'll just suck it up and continue. I don't think this would be different anywhere else.

Last thing, though: "He's not necessarily going to tell you what you want to hear. But, that's the stuff that usually is the most pertinent."

He didn't tell me anything, though. And I can't imagine anything I wouldn't want to hear. My whole experience with the doctor side of this has been: "here are some pills". We didn't talk about when I should take them, how I should take them, what was in them, what would happen if I didn't take them. I looked all that up, of course. We didn't talk about CD4s and viral loads and what the numbers mean or the importance of drug adherence or where I could go if I needed help with anything or who I could talk to or what do I do if panic returns? Maybe this is normal. If it is, our healthcare system sucks. I've avoided it until now, but all good things...

I really think the primary goal here is the public health, not mine. And I just need to accept that I'm not a patient. I'm a client.

Thanks, Robby! Yeah, I felt like it was time to go before I even sat down. I know they're busy, but sheesh. I came all the way here just so you could hand me a prescription? You could've faxed it and saved me the subway fare.

My doctor totally mentioned the kidney stuff to me, not the other way around. I know that the doctor I use is one that they give to the 20 somethings, but why not ask if there are any other doctors there?

many ADAP programs do mail order/delivery through a state-approved pharmacy because this saves the program buckets of money. Because they order in quantity (for all the ADAP clients) ADAP gets an extra discount, and going through one delivery pharmacy helps minimize paperwork while giving the state better quality control of the service.

It really doesn't have anything to do with us as patients - except to make it easier! Clients (who are often poorer and hence need ADAP assistance) don't have to travel anywhere; clients don't have to wait because their local pharmacy doesn't stock antiretrovirals; nor do clients have to encounter any stigma from the local pharmacist.

It's United Healthcare/Oxford that makes me do it this way. I have some weird set up where they argue with each other over who can pay because I can't. But United Healthcare sent me an angry letter. They take this Optum bullshit seriously.

I don't begrudge anyone using mail order if they want to, but it adds an extra, uncomfortable layer fr me. 1) I don't need more ways to avoid human interaction. I wanted to walk to my local pharmacy. 2) If I'm not home all day every day that I expect the package, I'm going to end up having to out to Canarsie to pick it up. I've had to do it more than once. UPS doesn't leave packages on your doorstep in NYC. I don't have a doorman, and I don't have a job, which is where most New Yorkers have packages shipped if they don't have a doorman. So, basically, I now have to just sit here and be here and wait to be sure that I get my pills. As someone who is nearly a shut-in, this sounds great. As someone who wants to get better and forces himself out of the house and to interact with people as much as possible, this is terrible.

I mean, I'll survive this terrible injustice (wink), but this mail order thing won't make things easier for everyone.

My doctor totally mentioned the kidney stuff to me, not the other way around. I know that the doctor I use is one that they give to the 20 somethings, but why not ask if there are any other doctors there?

So, if I'd contracted HIV ten years ago, I would've gotten the good doctor?! Now you tell me!

It does make me sad that yours told you all this stuff and is checking your kidneys. I assumed they just didn't tell people this stuff in general. Ah, well. I don't pay for it, though, and beggars and choosers and all that. I'm gonna just deal with it and stop complaining. I have the appointment in 5 weeks. I don't guess I could lose a kidney by then.

OK, thanks. I post here just to get perspective, and we've accomplished that. From all these conversations, it seems you're having the experience I thought I would have. That means someone somewhere is sad that their doctor tells them too much and doing a bunch of tests, and they wish they could have the experience I'm having.

yeah, i live in a factory/warehouse loft space in brooklyn. i would HATE if i had to rely on my mail for my meds...UPS is my enemy.

I'm so glad you said this. I'm starting to question everything I think. This mail order thing is supposed to be for my convenience? It's a hassle put in place so middlemen could make money off of people who have no choice is what it feels like. And I have no choice, so sit and wait I will. Maybe I'll take up drinking and smoking to pass the time.

My doctor always - always - asks me about alcohol, tobacco and drug use at every visit. And I tell him, precisely. It is incredibly liberating to me to have that level of openness with my physician. He even knows which drugs I like the best.

I am also on the beggar and chooser roster. I used to feel like you did about not being in the position to rock any boats, but I have broken through that. I have now had the good fortune to have two very good physicians with whom I can have completely open and honest discussion about my health in the big picture. I wouldn't want to go back to the old ways of keeping silent about such things, and am not willing to encourage that of you either.

Paying or not, you are a human being and you are worth receiving adequate care based on an open dialogue with your physician. I encourage you to read and reread Henry's post above. Assert yourself, and don't take it all so personally.

And stick around here. One of the best ways I found of fostering good dialogue came from being able to walk into the office armed with current, reliable information.

"My goodness you take this all so personally. Give yourself some time to get used to having HIV, working with a doctor, and become a better patient. Usually that means being honest about what is going on with you, insisting on answers rather than being dismissed, and thinking hard about what he tells you. He's not necessarily going to tell you what you want to hear. But, that's the stuff that usually is the most pertinent." from Henry's post.

I completely agree.

I would suggest a slight revision to your heading options. For a spell...Be a patient Patient.

Hey, Emeraldize. I don't know. That *sounds* sensible, but it just doesn't sit well with me that I only learn important stuff about my medication on poz.com. I'm afraid to tell him anything about side effects now, even the one that may actually be important - the kidney thing. As you can tell on here probably, I'm pretty open (That's my real picture over there. ), but I don't feel comfortable talking to him about anything really, and I have no relationship at all with my case worker in that same office. I'm still not 100% sure which one *is* my case worker, which is probably a bad sign. And, yeah, I do take it kind of personally. It's my health. I'm not too fond of life, but if I have to be here, I don't want to be more infectious than I need to be or have even fewer options than I do now due to neglect of HIV. I'm trying really hard to be responsible about this, but I don't feel like there's anyone in my corner on this.Your doctor should be your partner, not your adversary, no? Or am I idealizing this?

But, if you'll help me, I'd like to think rationally for a minute. Can you or anyone here answer this sincere (I mean, not loaded) question:

Is it normal for a newly diagnosed person whose medication was only approved a few months before he started it to have no blood or urine tests or tests of any kind for so long? To recap: diagnosed 11/20, one set of labs done, started Stribild 12/14, and nothing will happen until March 20. I had an appointment today, but it literally was just for a prescription refill and he weighed me.

If someone could tell me this is a normal scenario, I'd feel better about it.

I really do feel pretty well adjusted to the HIV thing. This isn't me freaking out about that. If anything, being HIV+ has kind of made life better as perverse as that may sound. Unfortunately my company shut down the same time I was diagnosed. Now, that, well, that I'm having a lot of trouble adjusting to. I'm working on development projects that no one ordered - like a Japanese salaryman going to the park all day with his briefcase full of nothing. :0

The possibility of suicide has come up in two of your threads -- I agree with Henry, this is serious and should not be dismissed. Here are a few thoughts I have:

I know you are in a very tight spot right now - financially, logistically, emotionally, and mentally -- things really can and will get better.

Please recognize that this community does care about you - you are not alone and there are people on this board that can relate. I also believe that your posts are helping people that are in a similar situation who read the boards but don't post.

With regard to finding a new doctor -- my take is that the patient/doctor relationship is built on trust, and some doctors are better at that than others. Trust has to be there, and as much as I hate to admit it, I think the patient has to work at building the trust (by questioning them tactfully and respectfully) more than the doctor. If you really don't like them - switch doctors. If you don't think they are doing something they should - talk to them and try to build the relationship.

My doctor always - always - asks me about alcohol, tobacco and drug use at every visit. And I tell him, precisely. It is incredibly liberating to me to have that level of openness with my physician. He even knows which drugs I like the best.

Nice. I wouldn't even have anything too exciting to tell him! His opinions are all based on the bender I had in the fall. I'm not even sexually active right now, but I could have sworn he rolled his internal eyes at that one when he asked me today. I'll admit, that's probably me being too sensitive. Of course, this is the same doctor who told me in November he had never heard of guys who glorify HIV and talk about 'the gift' and get turned on by pozzing scenes and all that. I still think he was putting me on. How can you be an HIV doctor in Manhattan and you've never even heard of that?

I am also on the beggar and chooser roster. I used to feel like you did about not being in the position to rock any boats, but I have broken through that. I have now had the good fortune to have two very good physicians with whom I can have completely open and honest discussion about my health in the big picture. I wouldn't want to go back to the old ways of keeping silent about such things, and am not willing to encourage that of you either.

Paying or not, you are a human being and you are worth receiving adequate care based on an open dialogue with your physician. I encourage you to read and reread Henry's post above. Assert yourself, and don't take it all so personally.

And stick around here. One of the best ways I found of fostering good dialogue came from being able to walk into the office armed with current, reliable information.

Thanks, I'm vacillating a lot today. One minute, it's "be grateful you have a doctor at all" the next minute I sound just like you. I was so disappointed in the appointment. I was curious if it was working or not, but I guess I'll find out in March!

Hey, Mitch, thanks for the message. This is really a great place. Knowledge really is power in some cases. I can't get enough info about HIV/AIDS these days, and there's so much more to it than what a doctor will tell you.

Even when I'm not posting, I skim through. The other day I was laughing all morning at that thread on, oh god who was it, uh, someone was asking about fasting before tests, but it ended up being a thread on, er, other topics.

Can you or anyone here answer this sincere (I mean, not loaded) question:

Is it normal for a newly diagnosed person whose medication was only approved a few months before he started it to have no blood or urine tests or tests of any kind for so long? To recap: diagnosed 11/20, one set of labs done, started Stribild 12/14, and nothing will happen until March 20.

Oks,

There are plenty on here that have way more experience than I do - but my experience was that I was prescribed Complera in July, started taking it in August (so I could build up a 2 - 3 week reserve supply) and didn't have any doctor's visit or lab work until November.

So I don't think your situation is abnormal. Also, I suspect that your doctor was looking for yellowing of the eyes or skin, rashes, itchiness (I don't know - I'm not a doctor), but he/she wasn't vocalizing all of that.

Again, others here have much more experience with this stuff but that is mine;

i'd probably give your doctor another chance, maybe was having a bad day or a busy day. but Dr/patient relationships are important so dont let it go on too long. I love my doc been seeing him for long, long time

Tell him how you feel if he isn't giving you the amount of attention you need, you pay for that visit just like everyone else does

Its old home day when i visit my doctor, he is gay, his nurse is a lesbian, his PA is a lesbian, matter of fact the only straight person in his office is the labcorp lady that takes blood.

BTW, before i switched jobs i used to have to get my prescrptions from mail order and these were not hiv meds, just 90 day supply. Now i can just go to my local CVS around the corner.

The doctor/patient relationship can be delicate even when things are going really well.

What you are feeling sounds pretty common to me. As a patient we get concerned about certain things we may be feeling or things we have read (like medication inserts) and expect the doctor to have the same level of concern we have. Doctors then will have concerns that we may think are trivial or irrelevant. Then throw differrnt personalities into the mix and it gets....delicate.

I am definately an advocate of ensuring you receive the best healthcare possible and holding your medical team to acting in your best interest. However, sometimes we do need to have a little faith that our doctors are treating us the best they can using their experience and education (which many times we dont have since we didnt go to medical school).

I know from my personal experience when I was newly infected I would read on these forums and hear from others how their doctors gave them a certain test or procedure and mine hadnt. I began to question why my doctor didnt do this or that. I began to question if my doctor was doing all he could for me.

After awhile I learned to stop doing that. Im glad I did and glad I didnt change. In faft just the other day I went to my dermatologist who specializes inHIV skin issues. She asked me who my HIV doc was. When I told her she said "oh hes excellent". Im glad I didnt dump him.

The possibility of suicide has come up in two of your threads -- I agree with Henry, this is serious and should not be dismissed. Here are a few thoughts I have:

I know you are in a very tight spot right now - financially, logistically, emotionally, and mentally -- things really can and will get better.

Please recognize that this community does care about you - you are not alone and there are people on this board that can relate. I also believe that your posts are helping people that are in a similar situation who read the boards but don't post.

With regard to finding a new doctor -- my take is that the patient/doctor relationship is built on trust, and some doctors are better at that than others. Trust has to be there, and as much as I hate to admit it, I think the patient has to work at building the trust (by questioning them tactfully and respectfully) more than the doctor. If you really don't like them - switch doctors. If you don't think they are doing something they should - talk to them and try to build the relationship.

As I said before, I really do wish you well,

JM

Thanks, really. I appreciate it.

Let me be really clear: I'm not going to be committing suicide now or in the near future. It's not gonna win me any friends to say it, but I don't believe suicide is a bad thing, so I'm a little loose in my speech, and I apologize. I know it's touchy for some people, and I really don't mean to be insensitive. Your life is your own, though, and for some people, it's the last thing you have any control over, and no one should be able to force you to stay in a life that's spiraling ever out of your control with no hope of recovery. I find it kind of comforting, actually to know that no matter what happens, God has given us a get-out-of-jail-free card: mortality.

But, yeah, I don't have the guts myself, and I don't want to encourage anyone who's mentally unstable to do something like that without giving it more thought than an unstable person can usually muster.

i'd probably give your doctor another chance, maybe was having a bad day or a busy day. but Dr/patient relationships are important so dont let it go on too long. I love my doc been seeing him for long, long time

Okidokey, that's what's probably going to happen. I should be spending all this thought power on solving other problems, not inventing new ones. I think I just had some idealized version of a doctor in my head.

So I don't think your situation is abnormal. Also, I suspect that your doctor was looking for yellowing of the eyes or skin, rashes, itchiness (I don't know - I'm not a doctor), but he/she wasn't vocalizing all of that.

Hehe, he didn't see any of my skin except my face and fingers, and I don't know if kidney problems would give you any outward signs, but your point is taken. Thanks. You have more experience than me, so it's valuable to hear even if other people here have more than you.

What you are feeling sounds pretty common to me. As a patient we get concerned about certain things we may be feeling or things we have read (like medication inserts) and expect the doctor to have the same level of concern we have. Doctors then will have concerns that we may think are trivial or irrelevant. Then throw differrnt personalities into the mix and it gets....delicate.

Hey, thanks. I know you know what you're talking about. I seem loud-mouthed, but I lurk a lot too and have read your posts silently.

I think the bigger problem would be ever feeling like I could talk to him openly about anything, but that's more my problem to deal with. And the end of March is a ways away, so maybe I'll have forgotten this all by then. Another of God's gifts: the ability to forget. In my case, he was very generous.

Something stuck out to me. You wrote: " He closes the door and tells me that mine is a confusing/difficult case because there's "so much going on there", like the drugs... So, OK, that's a conversation stopper.

Did he mention drugs, or is that what you read into it? I know I will read too much into what people say. I would give your doc another visit or two. I thought labs were usually run a month after starting meds, no? I thought this was one time, when they didn't wait 3-4 months until the next regular visit. If this is not standard practice, I know I've read many stories here, where people said they had labs done about a month after starting.

Did he mention drugs, or is that what you read into it? I know I will read too much into what people say. I would give your doc another visit or two. I thought labs were usually run a month after starting meds, no? I thought this was one time, when they didn't wait 3-4 months until the next regular visit. If this is not standard practice, I know I've read many stories here, where people said they had labs done about a month after starting.

Unfortunately, in this case I'm not reading into it. Maybe he thinks I've got a needle in my arm every night. Maybe I should wear short sleeves.

"I thought labs were usually run a month after starting meds, no?"

I guess not. People are saying (and I got a private message to the effect that) it's OK if you don't have labs for a few months after starting a new drug. I had thought you had them every month for the first three months: once before ART as a baseline, once a month after to be sure you were OK, then another time to establish your new baseline. But I don't know where I got that idea.

I have done my fair share of doctor shopping but I have always been very careful not to burn the bridge down on my way out when I switched . I had a doctor once that I simply didn't like at all and always left his office pissed off but eventually went back to him because he was such a good doctor if I could get past his less than pleasant bed side manner .

oksikokoYou have explained that you are completely alone, with no friends, no family no one. Said this a few times. I think you probably need more than one contact, more than this one doctor, for dealing with your health. It is great that you found this place Forums.poz and I think you should make a point of putting a lot of your concerns into question form, and ask them here.

My experience of an HIV doc, is that these docs are very very busy, like all docs, as a matter of fact. There are a few people in this forum who are going to jump in and say how wonderful his/her doc is and how patient and how he/she answers every qustions and is a kind and caring person and an expert and really best thing since sliced bread, but really, thats the exception....

You said maybe you idealised what you would get form your doc. Also, clearly, you didn't fall on Mr. talkative and loving thoroughness as a doc.

My first ID doc never had time to sit and answer ALL my questions, I had so many when I first got HIV. But he said write them down and he would tick through a few each time I saw him. In the meantime, I just asked a lot of them here in the FORUM and got a lot of answers, from real people, be they virtual. DIdn't even have to read very much myself. Got answers here, from lay people with experience, and got answers over time from the docs.

Since you have NO social contact, I think you might rely way too much on your one doc to be the jack of all trades. As for your mental and physical health, you could easily use a GP, an HIV specialist, and a therapist. Is any of that possible, in your situation?? Also, if not a therapist, you could usea caseworker or socialworker.

You have a very challenging load to deal with - no social contact, no job, no lodging, no money, and HIV to be treated.... You need more support by real people, and more support here in the forum - so at least ask all the questions you care to here.

Also, can you get into any sort of group at one of the centers, in NYC?

You go on an on about how unlikeable you are, but its a bit of a warped perspective, because nothing you have written in your posts so far shows any proof for that. Quite the contrary. It might be possible that you FEEL that you are unlikeable, unworthy, etc, but other people may not think of you that way at all.

You imagined a pretty nasty opinion that doctor might have about you, and it could be completely off base. Probably is. Most doctors just don't have time to waste being judgemental.

I do think you need some reality checks that you could find by daring to be around people more often, and soon.

« Last Edit: February 06, 2013, 09:20:39 AM by mecch »

Logged

“From each, according to his ability; to each, according to his need” 1875 K Marx

Hey, mecch, thanks for your, as always, thoughtful reply. You should charge by the hour.

I'm working on those very issues, and the forum here has been supportive, which is great. It's easy to start fixing these problems, but hard to stay on the path. I know because this is a familiar cycle, though it's never swung quite as close to the edge as I've let it this time. :-/

I had a case worker at Mt Sinai, maybe I still do. I don't know. It's not a relationship I want to pursue. I've been to GMHC to fill in the gaps of what I had thought the case worker at Mt Sinai would help with, and they've been really great. I don't know if it was in this thread or not but I mentioned earlier that even in cases where they really don't have any way of helping, they've referred me to other organizations or at least given me leads that I can check out myself. Not everything has been fruitful, but at least I'm doing something and out there getting more information based on those referrals.

The unemployment benefits are a godsend, but they put me over the income limit for some social services. Part of me wants to find a few new clients or see if anyone from my old freelance days needs anything, and just stop taking UI altogether but it's all so unsteady, while the UI is at least predictable. I'm too close to the edge to take a chance that one client doesn't pay or pays late or the check 'gets lost' in the mail. So, I'm playing it safe. There are two Department of Labor programs that I may participate in and will know next week. Either would mean a slower return to stability, but it would be a more stable stability than I would have if I try to just jump back in now. One of the only things I'm sure of in life is the quality of my work, so I think it's best to get back into it ASAP so that some of these other issues will disappear. Since I have the time, though, I'm streamlining the way I write code and my general development workflow. I'm filling in some of the gaps that appeared while I was working in an office instead of "in the trenches" last year. A year in web development is a long time, and my old best practices aren't all best practices anymore. I'm also bringing my iOS development skills up to the professional level (because why not?). It's been a hobby, but it would be a real waste not to use this time well.

Oh, and housing. I finally have a couple of leads with people who have rooms in my price range. I'll know soon if either is going to work out. In the meantime, the situation keeps shifting slightly in my favor in such a way that, though I get within 3-4 days of the thing I'm trying to avoid, I haven't yet gotten any closer than that (knock wood). Right now, I'm good for at least a week, which is a relief. If either of these leads pans out, then everything is going to be fine. If neither does, then I'll still have a day or three to continue the search. But we've all worked with less at some point...

That was probably more than you wanted to know, but my point is that at least some things are in motion now... I hate sitting around and waiting for other people to let me know what's going on, and I'll be really happy if I can somehow manage this without needing any other government programs or having to be a supplicant at any moe nonprofits.

Hey, sorry to bump this. I figured if you start a thread, you should probably close it out since these forums are theoretically of benefit to future people who scroll through looking for common ground. Narratives need a beginning, middle and end, right?

My therapist and new case manager both thought it would be best to get a new doctor. That doesn't necessarily mean that I was 'right' or that the old one did anything 'wrong'. I got the feeling that it was irrelevant: what mattered was that if I didn't feel comfortable talking about side effects that were worrying, I needed a new doctor regardless.

So, I have a new doctor. I'll see them in a little over a week. I'm not going to keep any secrets, but I am going to stress that I'm not using any illegal substances *now* so that hopefully my past won't continue to hurt my chances of living a regular life in the future.

{Non sequitur: I just heard gunshots outside. O_o Common enough around here, but it still freaks me out…}

Anyway, thank you all for your support. I also realize that I was attempting to use this forum as a way to solve real life problems, when really this is more a sounding board than a solution factory. Thanks for you tolerance of various adjustment styles.

One of the biggest challenges to figuring out care is a partner ( i.e. doctor ) that will take your concerns seriously and run the tests you need to get better.

Early on, I made a lot of changes, when my health was perfect. Becuase a local clinic that was supposed to be top of the line, treated me horribly. The doctor yelled at me, bullied me into making choices for my health and the phycologists almost called me an addict. On top of all that, it would take one to two months to even book an appointment. It's taken me almost two years to even discover all of their errors.

That said, recently, i've had a ton of health issues. I'm on meds, undetectable and CD4 is 750. But for whatever reason I came down with pneumonia. It's been a long road. But because I am now able to make quick health decision and my doctor takes my concerns seriously. I'm able to get my health back on track relatively quickly. He's also going overboard with testing. I'm excited about that because there are a few things that need to be tracked.

It took a long time to develop this relationship and I know him and his partner will go to bat for me. We can heal ourselves by giving others the tools to heal us.

You must find a good doctor and really understand that if their perception blocks the way they see you. They will miss something important.

I'll take this opportunity to post a follow-up that I found humorous. (The mildly humorous part is below the horizontal rule below, so you can skip the apologia that follows here. I tend to ramble, and I feel it coming. This and some online classes I'm taking are the only opportunities I have to communicate with peers as a sentient human being and not as a beggar, and I've noticed some delusions of grandeur in my writing lately, if you know what I mean.)

So, humor right... Well, I was crying at the time, which I do a lot of these days, but it's humorous in retrospect. I think they were sincere tears, but frankly, I can no longer distinguish when I'm crying because I'm sad from when I'm crying because I'm terrified from when I'm crying because it's the only decent way I know to behave as a supplicant or to express my gratitude for whatever is being given to me. Today Lachrymosa (my drag name if I did drag would surely be Lachrymosa) was crying because they gave me an unasked-for, round-trip MetroCard, and technically I'm not entitled to that. Compassion is a massive thing relative to its size, and this small token was bigger than the room. I don't want to think about what extra bureaucratic paperwork had to be signed in triplicate for the card, but I do appreciate it. Really, I could have walked. It was only about 30 blocks to what I'm calling "home", and my weight collapse stopped weeks ago. I should be exercising more.

I really feel bad for anyone who doesn't experience compassion on either side of the equation, but worse for those who never feel it than those who never receive it. I've been fortunate to be the giver once or twice lately with a couple of newly diagnosed people who aren't taking it as easily as I have, and brothers and sisters, let me tell you, the only time I've felt good in 2013 was when I knew that I was responsible for making them laugh or smile - even if it was for an instant - in the face of HIV. In my darkest moments lately, I remember someone telling me he had learned more from me (some of which I learned here, btw) than he had from his doctor and he felt better about his future because he was living in current knowledge not in 1980s-induced fear. I know some of you see me as a pessimist, but I only see a dark future for myself. This guy is talented and has a lovely boyfriend. There's no reason for something like HIV to get him down or derail his plans. Where was I? Right, my case.

So, as I said, I've taken my "case" into my own hands, because I no longer feel like being "managed" by someone else when as far as I can tell only I am particularly concerned about my own well being. Everyone else is more worried, as they probably should be, about the public health. I am more disease vector in their eyes, not a patient in my own right.

I think I've made this point before, but it's a powerful realization that many in my situation would do well to accept early. You are not a patient if you're a client, and not everyone in every agency has your health as their primary goal, though some may have it as a supplemental goal. Completely understandable, but many of them play a game of being compassionate because our ignorance makes it easier to control us in the name of public health. And like babies we ignorantly trust compassionate people by default. However, don't bite the hand that feeds you. I'm not naive enough to believe compassion keeps ADAP funding going. It's fear wot makes the world go round. They're afraid of us, but they don't have the guts to have us rounded up and sequestered in camps. The happy compromise is to keep us very well medicated so that our threat to the public is minimized. UD VL for you and me, means fewer folks get HIV. To which I say: You don't have to sit next to me, just give me my ART.

If you have private insurance, you're insulated from this reality. But if you rely on the public purse, it becomes clear very quickly who is paying for what and why and under which circumstances payments will stop. The trick is not to take it personally. Fortunately, I've got so much stigma, it's looped back around to charisma. I walk these streets like I own them now, and on that note, stop littering on my property, please.

Anyway, back to the thing I came here to post. Taking control of my own "case" led me to be at a state (as in government, not as in New York State) agency today. They, well, she was trying to reach anyone my old doctor's office for simple verification that the documents in my possession were authentic. However, even though it was well before 5PM, they couldn't get anyone to take the call, no one was authorized to look in my file, she was being transferred back and forth and generally given the run around. This is a state official, mind you, and I'm but a lowly citizen, lower than the average citizen by most metrics.

Finally she says, and I paraphrase: "Do you understand that I am calling you from the [insert department here]. You may not like having to take my call, but you will like an official visit even less. Now is there anyone I can speak to?"

I hate to be a stereotypical gay guy, but it seemed like Wonder Woman had just shown up to save me in her invisible jet.

Things started moving a bit more quickly at that point. I still have to go back tomorrow to pick up where we left off, but at least something's happening. I prefer being told "no" to being afraid to ask.

All of this will likely come to nought, since rules are rules and my situation is what it is, but, damn, it was good to see her cut through the rigamarole with nothing but her voice and to be *on* the side of the state for once.